13 weeks post radiation and throat pain continues

Posted by srm @srm, Oct 3, 2021

It has now been 13 weeks since my final radiation (33 sessions) for my Squamous Cell Carcinoma throat cancer on the right side base of my tongue. Also had chemo with Cisplatin.
I had my feeding tube removed 12 weeks ago yet I am still on a liquid diet thus still losing weight. My issue is the severe pain in my throat. I still have several mouth ulcers that are not healing. The pain in my throat is constant but exasperated by any attempt to eat or drink.
As mentioned, I am still on liquids (protein shakes, boost and ensure). Most of the pain is on the left side of my throat in which it feels like there is a lump, sore, tumour??? Pain level varies daily (hourly). Either get burning pain while consuming liquids or sometimes it feels like swallowing razor blades.
Sometimes I can endure the pain while drinking my meals. Other times I need to numb my throat prior to drinking my protein shakes. Anything I have read indicates that these symptoms should last 4 to 6 weeks post radiation. My treatment team tell me that everything is normal. I truly sense they do not believe just how much pain I am in. I have a very high pain tolerance but there are many times I am literally in tears while drinking my meals.
Has anyone else experienced severe throat pain for long durations post radiation. If so, how long did it last and is there anything you have done to help heal the sores.
I am getting very frustrated and depressed. I don’t expect to be 100% pain free but feel I should not be experiencing this amount of pain and that I should be eating soft foods by now.

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Dear SRM, this sounds very challenging to say the least. I feel for you. I too have SCC Base of Tongue but am only three weeks in. Is yours HPV as mine is?

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@rwdow

Dear SRM, this sounds very challenging to say the least. I feel for you. I too have SCC Base of Tongue but am only three weeks in. Is yours HPV as mine is?

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Hi @rwdow
Yes I’m p16 positive.
Not a smoker and a social drinker. Or was a social drinker. Last thing on my mind these days:).
I have been told that it is not common to have these issues but not out of the question so don’t let it worry you. They tell me I’m just unlucky. I ended up in hospital two weeks after my diagnosis for an emergency appendectomy. Obviously unrelated to the cancer. Then throughout treatment I ended up with gout in my left foot three times. Prior to my diagnosis I was metabolically as fit as they come for a 61 year old male. I was not on any medication. Perfect blood pressure, blood glucose levels, cholesterol etc.
I’m not sure what your treatment plan is but all the best to you. It’s not easy but we need to take what life gives us and make the best of it. With all the issues I’ve had post radiation, if given the option of going through all the treatment again or just going through what I’ve been dealing with since my last radiation on July 9th, I would choose the treatment.
I am now seeking alternatives such as acupuncture. Starting that this Friday. Stay strong and remember everyone is different. Odds are your recovery will be uncomplicated and smooth sailing.

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Hi. I'm a female and was 47 with the same type of cancer and treatment. Go see a PT that does stain-counterstrain. This treatment helped me right away. (I did not have pain, but couldn't swallow.) I bet they could help with the pain as well. It is important though that the PT know the counterstain technique.
Also…..find stretching exercises that will help with neck stiffness later. I wish I had done this. No told me to, and now 4 years post treatment, I'm dealing with horrible stiffness that causing pretty tough issues for me. Do the stretching exercises the rest of your life to prevent or reduce the horrible tightening of your neck. You will thank yourself!!!!

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@srm, what youre going through sounds horrible. Did you also have surgery?

Im 2 years post chemo for NHL and now recently diagnosed with inoperable stage 1 Squamous Cell carcinoma P16 of the throat at the base of the tongue. I met with the radiation oncologist yesterday and he gives me < 10% chance of needing feeding tube or having serious swallowing issues because the tumor is growing inward into my larynx. 10% seems like pretty good odds but, after reading what others are going through and already experiencing chemo in 2019, Im scared for what lies ahead. And I thought retirement was going to be fun!

Stay strong @srm and do what you must to get through it all. My thoughts are with you. Good luck.

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@fwpoole

@srm, what youre going through sounds horrible. Did you also have surgery?

Im 2 years post chemo for NHL and now recently diagnosed with inoperable stage 1 Squamous Cell carcinoma P16 of the throat at the base of the tongue. I met with the radiation oncologist yesterday and he gives me < 10% chance of needing feeding tube or having serious swallowing issues because the tumor is growing inward into my larynx. 10% seems like pretty good odds but, after reading what others are going through and already experiencing chemo in 2019, Im scared for what lies ahead. And I thought retirement was going to be fun!

Stay strong @srm and do what you must to get through it all. My thoughts are with you. Good luck.

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Hi @fwpoole
I believe everything will go very well for you. Did they tell you how many radiation sessions you will receive? I did not have surgery because the tumour was too large to remove.
There are others that have posted their adventures. All Head and Neck patients experience side effects. Some worse than others. As I had mentioned, I have had 3 different doctors tell me I’m just one of the unlucky ones. I have, or am still dealing with what seems like every side effect listed. I realize as a H&N survivor my life will never go back to pre-cancer normal. I don’t know what my new normal will be but I do know that what I’m going through will not last forever and stay as severe as it is now. My oncologist told me about a year post radiation gives you a fairly good picture of what I will be living with. In other words, by July 2022 I will have a fairly good idea what my new normal will be.
I hope all will go well for you. Stay strong and follow the advice of your team. Sounds like your odds are very good.

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@denisebriggs

Hi. I'm a female and was 47 with the same type of cancer and treatment. Go see a PT that does stain-counterstrain. This treatment helped me right away. (I did not have pain, but couldn't swallow.) I bet they could help with the pain as well. It is important though that the PT know the counterstain technique.
Also…..find stretching exercises that will help with neck stiffness later. I wish I had done this. No told me to, and now 4 years post treatment, I'm dealing with horrible stiffness that causing pretty tough issues for me. Do the stretching exercises the rest of your life to prevent or reduce the horrible tightening of your neck. You will thank yourself!!!!

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@denisebriggs
The clinic I’m going to for acupuncture has specialists in every alternative methods including PT. I will ask them about the strain-counterstrain technique. I also have become lax in my neck exercises. I will get back on that.
Thanks for the advice. I’m hoping the acupuncture will help with my saliva production. I believe that if I can start producing more saliva it may help with healing my throat and mouth sores. I can’t use artificial saliva because any that I have tried burn my mouth and throat.

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I was super lucky. I was the very last person to be a part of a study of a medication to prevent the mouth ulcers. It's called Galara. Luckily I didn't get the placebo, and it worked!!!! The new med for throat cancer patients should come out soon. I'm so sorry you have to deal with that. I was lucky!!!!

f you want, my sister who was my PT, may be able to get you in touch with counterstainers in your area. She has contacts that would know where people who take the classes are from.

I do think my saliva production is better than it was 4 years ago. I do, though, have my water bottle with me most of the time.

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@denisebriggs

I was super lucky. I was the very last person to be a part of a study of a medication to prevent the mouth ulcers. It's called Galara. Luckily I didn't get the placebo, and it worked!!!! The new med for throat cancer patients should come out soon. I'm so sorry you have to deal with that. I was lucky!!!!

f you want, my sister who was my PT, may be able to get you in touch with counterstainers in your area. She has contacts that would know where people who take the classes are from.

I do think my saliva production is better than it was 4 years ago. I do, though, have my water bottle with me most of the time.

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@denisebriggs
I’m in Canada. If she knows anyone in the Calgary Alberta area I would welcome the information.
Thanks

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@srm

Hi @fwpoole
I believe everything will go very well for you. Did they tell you how many radiation sessions you will receive? I did not have surgery because the tumour was too large to remove.
There are others that have posted their adventures. All Head and Neck patients experience side effects. Some worse than others. As I had mentioned, I have had 3 different doctors tell me I’m just one of the unlucky ones. I have, or am still dealing with what seems like every side effect listed. I realize as a H&N survivor my life will never go back to pre-cancer normal. I don’t know what my new normal will be but I do know that what I’m going through will not last forever and stay as severe as it is now. My oncologist told me about a year post radiation gives you a fairly good picture of what I will be living with. In other words, by July 2022 I will have a fairly good idea what my new normal will be.
I hope all will go well for you. Stay strong and follow the advice of your team. Sounds like your odds are very good.

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@srm , I will be going through the standard NCCN guideline of 33 radiation “treatments” (as if its a treat) of 69 RAD and three rounds of carboplatin/5-fluorouracil (instead of cisplatin).

There are many successful studies using less radiation and chemo, resulting in less long term side effects and better quality of life in the long run, but these are not approved per the NCCN. These studies are taking place because HPV cancers are showing up more in younger people in their 40’s who will likely live longer with long term side effects, which they are trying to diminish. For those of us in our 60’s, well, we’ve had a good run!

Unfortunately for us already affected, these studies can take as long as 10 years since they need a sizable study group over several years to meet the standard 5 year survival rate. So, here we are….

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@fwpoole

@srm , I will be going through the standard NCCN guideline of 33 radiation “treatments” (as if its a treat) of 69 RAD and three rounds of carboplatin/5-fluorouracil (instead of cisplatin).

There are many successful studies using less radiation and chemo, resulting in less long term side effects and better quality of life in the long run, but these are not approved per the NCCN. These studies are taking place because HPV cancers are showing up more in younger people in their 40’s who will likely live longer with long term side effects, which they are trying to diminish. For those of us in our 60’s, well, we’ve had a good run!

Unfortunately for us already affected, these studies can take as long as 10 years since they need a sizable study group over several years to meet the standard 5 year survival rate. So, here we are….

Jump to this post

Yes. 🙁 Here we are. It's hard.
I'm just hoping my neck doesn't feel worse. I'm four years out, and about a year ago my neck really started feeling stiffer and has effected my tongue (which has effected my speech a bit), and now my collar bone area and my shoulder blade and right arm. I get treatments by a DO and a PT usually once per week, but the side effects seem to be getting worse little by little from year 3 to year 4. *I'm a teacher so the speech thing is hard and exhausting. I talk quite a bit every day.

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